Inside my right nostril this nasal tube is 4 mm thick and about 1 meter long.
This tube, which was a little thicker than the phone's charging cable, was inserted through my jejunum through the nose.
Then through the small machine that pumps the nutrient solution, the nutrient solution is injected to help me "eat".
What exactly does this process feel like? As you can imagine, the feeling of being blocked in the nose and throat but unable to be eliminated.
The foreign body sensation is accompanied by pain and will persist for a long time every minute of the nasal feeding process.
In addition, I have very severe rhinitis, one nostril is inserted with a tube, and the other nostril is often not ventilated.
I couldn't sleep for more than ten nights because of breathing problems, and many of these nights, I felt from the bottom of my heart: I couldn't hold on for one more minute.
But the next morning, I still had to take this tube with me, try to live a normal life, learn to look at people differently, feel uncomfortable with my body, and get along calmly.
Because this is the only way to rest my scarred intestines, and it is also the way to have enough nutrition to cure my illness and live.
I spent 111 days "eating" food with my nose like this.
It was when I was seeing a doctor that I learned that there was still a disease like "Crohn" in the world.
At that time, the doctor said: "Multiple ulcers of the intestine, diarrhea, moderate to severe malnutrition ... Crohn's disease is suspected. ”
After checking the information, I learned that Crohn's disease, which at first glance sounds very abstract, has another name that is blunt and frightening: "green cancer".
For me, it may be the culprit that makes my digestive tract full of large and small ulcers, the culprit that makes me completely unable to eat, and a time bomb in my later life - even if it is temporarily alleviated, we must always beware of its comeback.
This name seems to sentence me to a "death sentence" for me, who was just 20 years old at the time and was still looking forward to a new life.
Not only myself, but none of our family could accept this result.
Fortunately, the doctor did not immediately make up his mind at that time. After examination, his diagnosis was left: intestinal tuberculosis and Crohn.
Intestinal tuberculosis can be cured, while Crohn is a "terminal illness". Because my symptoms were unclear, the doctor decided to start with diagnostic anti-TUBERCULOsis treatment.
That is, take anti-tuberculosis drugs first to see if there is any use, if it is useless, it is not intestinal tuberculosis, and it can confirm the diagnosis of Crohn.
For the next six months, I took anti-tuberculosis drugs and drank nutritional powder, and I felt better, happy at school, and sometimes even felt that it was not so bad to be sick.
But suddenly one day, the obstruction found me, and I began to be completely unable to eat, and it was difficult to drink a meal of nutritional powder every day.
From that day on, I didn't go to class, canceled all social activities, and lay in bed in my dorm room every day.
Because lying in this way, you can save physical strength, and when the hospital has an empty bed, you can immediately be hospitalized.
But I couldn't wait for the bed, and my physical condition didn't allow me to wait any longer.
At this time, a patient suggested that I go directly to the emergency department, so that I could be directly admitted to the hospital by the emergency department. I quickly called my mother in my hometown and asked her to come to the hospital the next day to accompany me.
Because of my lack of physical strength, I couldn't stand steadily at that time, so I had to send WeChat to my boyfriend at the time and ask him to send me to the hospital.
The boyfriend at the time agreed at first, but in the middle of the night, he temporarily repented, and refused to send me on the grounds of "not daring to see your mother". Despite my frailty, I was angry, and at my strong request, he promised to send me during the day the next day.
The next day, it was my 20th birthday, he gave me a birthday present, took me to the hospital door, and then turned around and left.
I didn't have time to think about it too much, so I hurriedly met my mother and began the three-day and two-night "devil" journey of the emergency department.
Day 1. The emergency department is crowded and noisy, like the school that just left class, because of the lack of physical strength, I need to sit down, the crowded emergency hall, the seat is difficult to grab, it is difficult to sit down, but a day passed, only to wait for a part of the examination.
On the second day of the emergency room, because of the epidemic, my mother could not go into the observation room to accompany me, so I stayed alone, and the doctor had to insert a gastric tube as soon as he saw me.
The gastric tube is the tube as thick as a finger in the picture below. At that time, my entire nostrils were stuffed, and every word I said was a torment.
My mother was not around, my boyfriend was not heard from, and I was alone with a stomach tube, sitting on a chair in the observation room, waiting for the bed that was far away.
The body is uncomfortable, and the heart is even more tormented.
Finally, I messaged my boyfriend and asked him what he really meant.
After a while, I received a brief reply from him: "Let's break up." ”
My tears flowed out immediately, in fact, the tears have not been broken since the intubation of the stomach tube, and I can't tell which is more uncomfortable physically and psychologically.
In short, crying tired of sleeping, waking up to look at the phone, just like this a day and a night, the time seems to have no end, because the feet have been sitting, they have swollen to twice the original size.
But I waited for the bed.
When the nurse pushed me in a wheelchair from the emergency department on the first floor to the inpatient department on the sixth floor, it felt like going from "hell" to "heaven", finally able to lie down, and the world was finally quiet.
In this quiet world, there is also a doctor's voice: diagnosed, it is Crohn.
At that moment, I calmed down, even relieved, and the whole person had a kind of relief that the dust had settled.
Suspected of being Crohn's days, I did not frantically check the literature day and night, and I sat on every symptom of the number, completely unbelievable and unacceptable, I had to get this "cancer".
But after the real diagnosis, I was able to accept it, but I also "instigated". The determination and courage to fight the disease, to collapse in the pain of treatment again and again, and then to rebuild, to collapse again, to rebuild again.
When I was diagnosed, my biggest feeling was guilt. I feel very sorry for my family, after all, it is not cheap to treat Crohn's disease:
One injection of biological agent 1290 pieces, two weeks to get an injection.
The nutritional powder to be used for nasal feeding will cost more than two thousand in half a month.
There are also various checks, each of which is a few thousand pieces.
……
Before you make money, you have to spend so much money... I have thought about it more than once, and I am not cured. But when I finally said to my parents, "I don't want to be cured, let's go home"...
But Dad said:
Although it is cured, no matter how much money is, no matter what method is used, the cure is good, as long as it is healthy. Although my mother did not say it, she always accompanied me and took care of me when I was most vulnerable and uncomfortable.
Diagnosed with a "terminal illness" at a young age, desperate?
It is desperate, but because I am still young, I still want to live a long, long life with my family, there are still many things in my life that I have not experienced, many of my expectations for the future have not yet been realized, and I am really unwilling to be "interrupted" by illness at such a time.
So, with the encouragement of my parents and friends, I reorganized myself and decided to be as positive as possible for treatment.
Although it ignited the fighting spirit, it did not mean that I was weak enough to overcome all difficulties.
The day of the nasogastric tube came.
Because the duodenal stenosis is severe, I can't do anesthesia when I go down the nasogastric tube, I can only harden it. Doctors need to use a gastroscope to insert a nasogastric tube into the jejunum.
That is, at that time I had a gastroscopy in my mouth, a nasal nasal feed tube, and there was no anesthesia. To make the operation go smoothly, two nurses pressed me, one on the head and one on the leg.
Seeing my uncomfortable look, the nurse sister would touch my head and try to comfort me.
But at that time I had only one thought: why don't you kill me?
I cried a lot after the nasogastric tube, but even if the tube was uncomfortable, I didn't want to pull it out, because I knew it wouldn't be easy to come by.
When I got back to my roommate, I received a spring dress from my college roommate who had rushed for an hour and a half and specially sent me spring clothes.
I slowly looked through their handwritten blessing cards and gradually calmed down, especially hoping that my illness would soon ease, return to school early, and resume a student's normal life.
My strength and determination were also "born again" in this hope.
After the 21-day hospitalization, I went back to campus.
Many people will hesitate to give up reading and work after suffering from Crohn's disease, after all, nasogastric feeding has all kinds of troubles, and it takes more courage to integrate into the crowd with nasogastric tubes.
But I have to study, and life in the hospital and at home is really gray and boring. My life also needs to have purpose to move on.
At school, my roommates took care of me a lot, and their company made me more courageous to face all kinds of eyes.
We take classes together, go to the supermarket, and often have dinner together. Although my roommates were "strictly guarded" and would not let me eat a bite during the dinner, I was happy to be able to "eat" with my eyes.
On campus, I rarely encounter strange eyes, and occasionally my classmates ask me, why do I bring a pipe? I'll also be happy to explain to them that I'm because I have Crohn, and by the way, I'll take a look at the disease.
Once I go out, it is inevitable that I will encounter some people staring at me intently.
Although it is difficult to distinguish whether the eyes behind this part of the gaze are good, malicious or just curious, but slowly, I also began to care about these eyes and the meaning behind them, and even took generous photos with my roommates to record the life of nasal feeding.
Because I took a lot of detours when doing nasal feeding, I tried to record a video and post it online, just to share my experience and encourage patients.
Unexpectedly, many strange netizens also came to encourage me after seeing it.
Life slowly took on color, and the love around me and the network wrapped me up, pulled me back from the brink of every cry to collapse, and made me stronger and stronger.
In fact, I have been a girl who has been crying since I was a child, and I have cried since I first got sick.
But crying does not mean not being strong, after crying I will still face it bravely, and accepting my own bravery is also a kind of bravery.
After 111 days of nasal feeding, I was extubated.
I didn't expect to be able to extubate.
Because the ultrasound B before preparing for extubation showed that my duodenum was still very narrow, which meant that the tube could not be unplugged, but also hospitalized for dilation surgery.
I was mentally prepared for the worst, but after a gastroscopy, I ushered in a turnaround.
The doctor said the results were good and that the tube could be extubated. At that time, I had just woken up from anesthesia, and I was still dizzy, and when I didn't react much, the doctor pulled out the tube.
In the days to come, I can eat normally!
As a Sichuan girl, now I can only eat light food that is easy to digest, and all spices cannot be dipped.
But the first noodles after nasal feeding, still so fragrant that I almost licked the plate, the rice was so delicious, and the feeling of being full was too happy!
Later, in order to make a suitable meal, I moved out of the bedroom, rented a house and lived alone, I began to renovate the rental house, using nutritional powder to make milk tea, and actively developing various soft and rotten "dark dishes"...
Now, every day is ordinary and fulfilling. The days of illness in the first two years were like big dreams, but they reminded me all the time to cherish the beauty of the present.
I believe that as long as we persevere, there will always be unexpected warmth and endless hope ahead.
postscript
Regarding the future, the small goal is to gain ten pounds, the big goal is to go to graduate school, and I want to do research on the diet of Crohn's disease patients in the future.
To write down my experience here in its entirety, I actually want to say three words to crohn's disease patients and all the girls who are plagued by the disease:
1. Listen to the doctor. Choose a good doctor and trust him/her.
2. Don't be afraid, I know it's hard to face the disease calmly, but you will slowly find that it is not a big deal, live like you are not sick, and you will soon get better.
3. The pain is only temporary, a good tomorrow will come, I am like this, you will be like this.
This article is published with permission from @Bilibili.
Doctor reviews
The girl went from diagnosing Crohn, fighting Crohn, to finally returning to normal life, the road has gone through hardships and pains, and finally ushered in a new life.
Her experience is heart-wrenching, even more moving, and very representative.
Like this girl, most people with Crohn's disease are diagnosed at a young age. According to mainland statistics, the peak age of onset in Crohn is 18-35 years old.
There is no obvious cause of the disease, and diarrhea (which may include bloody stools), abdominal pain, and weight loss are the most common symptoms at the onset of the disease.
If a young person has such symptoms, accompanied by perianal lesions (perianal abscesses, perianal fistulas) and extraintestinal manifestations such as skin, eyes, and hepatobiliary lesions, crohn is highly suspected.
Crohn is known as "green cancer", and many people are afraid that this disease will affect subsequent life, and even lifespan, in fact, Crohn is not so terrible.
Although Crohn lacks the "gold standard" for diagnosis and cannot be completely cured, it is a long and difficult road to be diagnosed or treated.
But as long as you receive the right treatment in time, ensure nutritional support (nasal nutrition) and medication (the patient receives immunosuppressant injections every two weeks), and if necessary, surgery is performed.
The inflammation in Crohn's patients can be well controlled, and they can return to normal life, and their life expectancy is generally not affected.
Like this girl, after the symptoms of many Crohn's disease patients are alleviated, as long as they pay attention to diet, regular review, and good physical care, they can continue their dreams, to study, to work, to get married and have children, and to have their own family and ideal life.
So even if the name "green cancer" is so terrible, as long as you are firm, optimistic, and insist on receiving treatment, life will not be interrupted.
In fact, the same is true for many patients who are sick, even those who suffer from "terminal illness".
I hope that girls who are struggling with the disease will not give up hope, even if it is difficult, they must persist for a long time, a little longer. Your hope and new life are coming.
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